Health

12:42 pm

Fri June 1, 2012

Remembering A Son In 'Immortal Bird'

This is SCIENCE FRIDAY. I'm Ira Flatow. For the rest of the hour, a look at an extraordinary life and a heartbreaking loss. In his new memoir "Immortal Bird," Doron Weber takes us to the inner circle of his family, where we meet his son Damon, a smart, likeable, aspiring actor born with a congenital heart defect. At 16, Damon undergoes a heart transplant, and his short life ends not long after in the ICU of a hospital that, according to Doron, seemed to botch his care in multiple and unimaginable ways.

The book is a very personal and in a heartbreaking account of Damon's life and death and a frightening look at how the medical system we trust may fail us. Here to talk about it is Doron Weber, vice president of the programs of Alfred P. Sloan Foundation. His new book, as I mentioned, is called "Immortal Bird: A Family Memoir." Welcome to SCIENCE FRIDAY.

DORON WEBER: Hi, Ira. Thanks for having me.

FLATOW: Why did you write this book?

WEBER: I wrote this book as a celebration of my son's character and his remarkable life and as a way to resurrect him and bring him back after his death.

FLATOW: Tell us about who he was.

WEBER: He was a very joyful, fun-loving kid who overcame early adversity and I think had a bigger life than many people. He was, as you said, an actor. He made his national television debut on the HBO series "Deadwood." He starred as Mercutio in the Provincetown Playhouse production of "Romeo and Juliet." And he directed a play with 23 actors at Brooklyn Technical High School. And he skied and he sailed, and he rode wild hoses with a world champion bull rider.

FLATOW: Hmm. But he was born with a congenital heart defect, right?

WEBER: Yes, a single ventricle system, essentially...

FLATOW: Which means he was missing something in his heart.

WEBER: Yes. When the blood - his left ventricle worked. It sends blood throughout the body. When it comes back, it's blue and it needs to - because of carbon dioxide. It normally comes to the right side and gets kicked up into the lungs where it picks up fresh oxygen. He didn't have that working right ventricle.

FLATOW: So you needed to give him special care all during his life.

WEBER: After his second open-heart surgery at the age of four, he actually - he did very well for the next nine years, and he didn't require any special attention. He'd have checkups once every six months.

FLATOW: But eventually, he needed a heart transplant.

WEBER: Yes. Around 9/11, he was diagnosed with a secondary illness called protein-losing enteropathy, and after three years of trying every other possible therapy, the heart transplant became the only alternative.

FLATOW: And you're a pretty knowledgeable guy. You knew all - you know a lot about medicine. You read science. You've kept up - you keep up on details of research, and yet you, too, had a difficult time selecting a hospital and going through all the things while in this traumatic part of your life. How did you do that? How were you able to choose the hospital to do it?

WEBER: Well, first I consulted with a lot of people who knew more than I did, and I did a lot of reading. And I tried to get data. The hardest problem is there is no data available to the public because it's about money, and hospitals are competitive. And they don't want to release data because they're afraid one of - somebody's data might be better than theirs. So it's very hard to compare across hospitals.

FLATOW: Mm-hmm. But you finally settled on one.

WEBER: Columbia had been Damon's hospital since birth. They were a pioneer in heart transplantation. But what convinced me was a pre-print of an article that they were just going to press that actually showed outcomes for people with his kind of illness and that's what - and then I would take that data. And I went to the other hospitals like the Mayo Clinic, Children's Hospital of Philadelphia, and I would ask them how they stacked up against that theory.

FLATOW: So they were sort of competitive. They're giving you their best look forward on the sheets they had then.

WEBER: Yeah. I mean, they're - because it's - heart transplants are about half a - if you have insurance, and we had to put insurance, about half a million dollars each. And so there were many hospitals who were interested in having him as a patient.

FLATOW: 1-800-989-8255 is our number. Talking with Doron Weber, author of "Immortal Bird: A Family Memoir." This is a very interesting read. You will both cry and be outraged at the same time when you read this book. Once you start it, it's a page turner, very interesting story. So give us a little bit of what happened. Tell us about the problems in Damon's care. What happened once you got the heart transplant?

WEBER: Well, the heart transplant itself was actually successful, and he was doing remarkably well. The big danger to heart transplant is the operation itself and then getting out of the hospital. It takes about a month, and you went through all kinds of hellish things, but he made it. And once he got home, he was effectively - was looking at, you know, 15, 20 years and then the possibility of re-transplantation. But in the after care, he developed an infection, which they misdiagnosed and treated as rejection.

There are two big problems with heart transplants, rejection and infection, but they're treated in opposite ways. And if you test for one and it's negative, you need to look at the other. And they kept looking and treating him for the first, for rejection.

FLATOW: And one of the parts of the book that's most striking, and I think we all relate to it, all of us have had loved ones in the hospital. And we all know how much time you as an individual have to take the place of a doctor, the place of a nurse, hang around a hospital. You talked about days and weeks that you spent at his bedside in his hospital.

WEBER: Yeah. Well, his mother and I, I mean we never left him alone for - one of us slept in the hospital every single night that he was in the ICU. And you learn that you have to monitor everything. I think that's normal. Everyone has to do that. The patient's family members need to take it upon themselves to learn as much as they can and to stay on top because the modern hospital system is - you had Arnold Relman on before and I think he has a very eloquent and I think correct analysis of the problems today. And I agree with his analysis, which is essentially profits over people. And so one has to try and insert the human element, and no one cares more than the patient's family.

FLATOW: Mm-hmm. So do you believe there was a breakdown in the care that he got in the hospital?

WEBER: In this particular instance, and I should say that Columbia is a great hospital, and he always had great care and therefore we knew what the normal standard was, and I think in this instance the people looking after him did not maintain that standard of care, and they did not follow. No one can - you can't ask for miracles, but you can demand that people follow appropriate standards of care. And I think in this instance it's our view that they did not.

FLATOW: Mm-hmm. And did you - are you able to identify what those are, and for other people going through the same situation, to advice them what to expect and how to avoid what happened?

WEBER: Well, I mean there were series of - I think the underlying problem in this instance was what we called continuity of care. The entire approach - as opposed to, again, the previous treatment that we'd had at Columbia, all those other years when he had these very fine physicians who were looking after him, was that you have a single person who's responsible and who's monitoring him, which doesn't mean - you know, doctors have a right to vacation and time off and weekends and vacation like everyone else. But it means there's a sense of responsibility and tracking what's going on.

And in this case, it was more like what we called a shell game where, you know, the statement was the person on call is the person in charge, and there was no continuity. And so you don't have anyone following the ups and downs, and who knows what he sounds like. So that when there's a change, you can hear the difference.

FLATOW: 1-800-989-8255. You refer in a couple of places in your book to doctors who have, quote, "the gift." I was hoping you could elaborate a bit on that. What makes a doctor have a gift? How can you tell the doctor has a gift?

WEBER: Usually after you spent as much as time as we did in the hospital, you can tell at about the first 10 seconds...

FLATOW: Is that right?

WEBER: ...when they walk in the room. I think it has to do with empathy. It has to do with a clear-eyed approach, a certain kind of calm, a willingness to listen, to pay attention, and also to admit what they don't know. I mean, they don't need to pretend that they know everything. They will tell you, to the best of our knowledge, this is what we can do, this is what we can promise you, we're not sure about this, but it is intuitive. I mean, I think people are - born(ph) doctors or great doctors.

I mean, there was one, William Hollenbrandt(ph), who I pointed out in the book, who was just an amazing person both technically and as a human being. And there were others, residents, younger people, and they walk in the room, and right away you feel comfortable, and you know you're in safe hands, in good hands.

FLATOW: Do you rethink this over in your head? If I only had done this differently, made one more phone call, done something in advance? How could you not think that?

WEBER: Absolutely. We go over and over and over and over again. Absolutely, yeah, there's no getting away from that, and I don't think I ever will get away from that. That's just something you live with it. But I would just emphasize that the book is not just, well, a lot of the reviews of, you know, and they've been very positive, about the medical aspects of the case.

It really is a celebration of a remarkable - of a teenage boy. And I think some of the letters I've gotten that have been really moving to me have been from young people in their 20s and 30s who've told me that, as moved as they were and heartbroken by the book, that it made them want to become parents. And that is the kind of - that was an unexpected but a very positive response that made me happy.

FLATOW: And because of his activities in the theater, you have a theater prize that you gave out in your son's name every year, do you not?

WEBER: Yeah. In fact, next week at Brooklyn Technical High School we're going to give the annual Damon Weber theater prize. It goes to someone who excels in acting, writing or directing for the theater. It was a way to keep alive both his memory and to help support the program at Brooklyn Tech.

FLATOW: What kind of reaction have you gotten from the medical community on that?

WEBER: On the whole, the reaction has been surprisingly positive and very heartening. You know, there's been some ambivalence. There was a doctor - when I went to Washington to lobby for some legislation for congenital heart disease, a cardiologist came up to me and said she wanted to meet me because she was reading my book as were half of the 26 cardiologists in her unit. They were all discussing it. And while they didn't agree with everything I said, that they did feel that they were happy I'd written it, and they felt the big part of the problem was communication, so they - and that the doctors need to do a better job in communicating with patients.

FLATOW: Talking with Doron Weber, author of "Immortal Bird: A Family Memoir." Let's go to the phones, to Lynne(ph) in Roswell, Georgia. Hi, Lynne. Lynne, are you there? Well, let me see. Lynne in Roswell, are you there?

LYNNE: Yes.

FLATOW: Hi there. Go ahead.

LYNNE: Yes, I'm here. OK. Sorry.

FLATOW: It's OK.

LYNNE: My mother was a heart transplant candidate and had to be removed from the list because she would not have survived the surgery. And one comment that I would like to make is that the doctors that handled this, this process of admitting her to the list and then ultimately removing her from the list, were absolutely marvelous. And we wept together when they pulled her from the list. You can't even pray for someone - for a heart for your loved one because someone else has to die, and it puts you in a horrible position. So bless you, and thank you for the book.

FLATOW: Thanks for the call. 1-800-989-8255. Well, let's take another call from Bruce. He says he's a physician in San Francisco. Hi, Bruce.

BRUCE: Hi. How are you?

FLATOW: Hi there.

BRUCE: So I have question about how one decides where to get care, and your guest, Mr. Weber, talked about looking at outcomes data from Columbia in making his decision - one of the big factors in making his decision about taking his son there. This is a problem or an issue that I face all the time as a physician with patients as well as with friends and family. You know, who's a good doctor, whether it's a primary care doctor, whether it's a specialist, whether - and, you know, what's a good institution? What's the hospital?

Outcomes data are a good measure to look at, but obviously, well, I presume in this case Mr. Weber feels like he didn't make the right decision. Maybe I'm assuming incorrectly, so I don't know. I don't have any answer to this, but I'm interested to know what your guest thinks about it and if he has any other ideas about how to better choose a locale or a physician to deliver care.

WEBER: Yeah, thanks. I think - first of all, I think I did make the wrong decision, so I wouldn't argue with that. But it wasn't just outcome data, it was also - proximity to home was very important because the first year, especially after a heart transplant, you need to constantly come in and Columbia was closer to our home. And my son had been treated there all his life, so he felt comfortable there. So those were factors.

I don't think there's a foolproof method, but one thing I would say is that you should trust your instincts because in the end I think what failed here was the human element. And that one has to just go by your gut feeling. And in this instance I probably was - let the numbers, the data, overcome any personal reservations I had in making my decision.

FLATOW: Talking with Doron Weber, author of "Immortal Bird: A Family Memoir," on SCIENCE FRIDAY from NPR. You write in the book that you were a very private - you were very private about your son's illness, that you hadn't even shared it with your assistants at work, people who you know. Why then did you decide to make it public and go public with it?

WEBER: Well, once Damon was dead, it was - I felt that it was the only way to - as I said, to bring him back and to share his life, and there was no other way to tell the story. And I think while it was going on, it was so overwhelming, but the only way to handle it was to, you know, maintain an external life and try to cordon it off.

FLATOW: Mm-hmm. There are so many moments in this book where you're responding to a crisis. Your son's blood pressure is dropping rapidly. At one point his heart stops. He's getting CPR. You describe these events in amazing detail. How do you remember? How did you remember all of these things?

WEBER: What's amazing is that the mind is actually - records everything. And if you just spend enough time and you focus, what you discover is nothing is ever lost. And so this was a process. And one of the amazing things I learned in writing this book was that nothing goes away, and you just sort of peel back layers and layers and you just sit there. And by the, you know, after a couple of hours, you feel like you're literally living it or reliving it and you're in the moment, and it seems like it's a verbatim conversation that you're hearing.

FLATOW: Mm-hmm. You have other children?

WEBER: Yes, Sam and Miranda.

FLATOW: And how has this book affected their lives?

WEBER: It's probably too early to tell, but my son Sam and I have discussed it. And he, you know, he said - to me, anyway - many positive things about it. And I think there are obviously things in it that he couldn't have known at the time, though when he said that to me he said, well, Dad, I knew - I kind of knew most of it, so I don't - I can't tell how much of it was, you know, was new to him or not. And I think it's going to take years, really, for the full impact to register. So it's a question I could answer in 10 years better, perhaps.

FLATOW: Mm-hmm. Let's go to Amy in Appleton, Wisconsin. Hi, Amy.

AMY: Hi. How are you?

FLATOW: Hi there.

AMY: I have a 6-year-old that has hypoplastic right heart syndrome similar to your son and - and first of all, I'm sorry to hear about your son and wanted to say that as a mother, you know, that's - hearing your story is kind of like looking into some of my worst fears. But I wanted to ask, what do you suggest as a parent of a younger child, who, you know, has had the corrective surgery and is looking for the best care for a daughter? You know, how do I, you know, seek out that kind of care? And I know you said that, you know, a lot of that information is kind of blinded . But do you have any suggestions?

WEBER: I think talk to as many people as you can, and keep abreast of the literature. I mean I think it's important to actually - even if you're not scientifically trained, I mean, you know, once you're motivated - and I'm sure you are about your son - then you need to, you know, keep an eye out for any new developments. But beyond that, I think, it's just a question of if you're satisfied with the care you're getting now and just keep, you know, stay very vigilant.

FLATOW: Mm-hmm. All right. Thank you, Doron, for taking time to be with us today. Doron Weber is author of "Immortal Bird: A Family Memoir." It is a very interesting read. You will - you'll both cry and be outraged at the same time. Thanks for coming in today.